My Journey - Learning and Life through Alpha One

Saturday, December 17, 2022

THIS BLOG is about Alpha One Anti-trypsin deficiency, and the goal about it is to help others. I have had a knowledge of this genetic condition for about ten years. 

DISCLAIMER: I am not a doctor or in any medical field.  I do receive infusions to receive the amount of the "anti-trypsin" protein my body needs. That doesn't make me an expert. I cannot tell others what to do, only explain what I have learned, and accomplished. In a way, a chronic illness helps you learn more about yourself than any thing else, and what works and what doesn't. I hope that my discoveries can bring light to others and help them find answers for themselves. Research for yourself. 

THE START OF IT: There is no definite time period for me about realizing there was something unusual about my health. But when I would travel to higher elevations, I had a hard time walking around and was out of breath. I thought I was just getting out of shape or something, getting older. I had been in pretty good shape, was watchful about food (gardened), and walked 2-3 miles several times a week at a good pace. Then, all of sudden, I could barely keep up ono walks with my husband. One viral illness took me to an urgent center, as I could hardly breath. I was treated with a steroid (which worked.) But the breathless issue was still there. It would take forever to clean house, because I would need to sit down and rest after just vacuuming one room. But I found that after cleaning it was easier to breathe, so that was a great incentive to make sure the house was extra clean from dust. Furniture was frequently vacuumed. Linens and quilts were cleaned and "dry-dusted" in the dryer on air dry. 

I still wondered if there was an underlying issue. (*A wonderful pharmacist had some tips for me on keeping my lungs clear, which helped A LOT. One of those was to eat earlier in the evenings and then sleep with my head and chest elevated to avoid having acid reflux from coming up and then going down into my lungs. Acid-reflux really impacts breathing ability for everyone, actually, not just Alpha One patients. Another was to stay hydrated - hydration is everything, but is especially important for Alpha One patients: hydration enables the lungs to keep the body clear of toxins, and for the kidneys, which eliminate those toxins.)

SO, WHAT WAS THIS? Family members and I wondered if the breathing issue was adult onset asthma. I went to an allergist physician. He ran the usual allergy tests, which came back negative on the asthma. I had no major allergies (except two trees - birch and cedar.)  The medicine and food allergies I already knew about. He then suggested that I take a test for Alpha One Antitrysium Deficiency, something I had never heard of. The initial pin-prick test was sent in, and the results came back positive. A more thorough blood test was done and it was found that my body lacked a substantial amount of what was called "antitrypsin". Because it's a genetic condition, the lack of that particular protein had been there all of my life. The allergy doctor sent me to a doctor who knew about Alpha One to receive further treatment and care. I am fortunate to have only been through one doctor to find out what it was. Many "Alphas" go through many doctors until this is known and resolved. 

Enlightenment and KNOWLEDGE: The liver does many things for us. It makes many, many various things to help our bodies and organs. One thing it makes is an enzyme called antitrypsin - for your lungs, to shelter them from white blood cells that come to attack disease. If enough of the antitrypsin isn't there, your lungs face a uphill battle with your body's own white blood cells. 

OH, SO THAT'S IT!  It was great to find out what the issue was. And, especially after reflecting on (unknown to me) Alpha One issues I had had earlier all my life now made sense. When hiking in high elevations, I could hardly keep up with everyone else, because I was always out of breath, no matter how well I trained. When I lived in lower elevations, there were no issues, except I found I could not be around any lawn and house spray chemicals, aerosols (like hairspray), perfumes, etc., because of high sensitivity to them. It was only when in my fifties that my lungs decided they needed help. 

Because it's genetic, my parents were tested, and they found out that both of them are "carriers" of Alpha One. But they hadn't any realization or knew about Alpha One either. I researched and learned through Alpha One meetings that Alpha One comes through the western European (like England) and Scandinavian countries - but it actually started in Sweden.  A Swedish doctor actually was able to pinpoint where in Sweden the gene mutated. A knowledge of family history illnesses can show where genetically DNA gene-related issues come from. There is Swedish and English ancestry on my parental lines. Because my grandparents and older relatives were all deceased, I went through death records to ascertain where Alpha One could have come from in my family tree. Not everyone had symptoms, not everyone had lung issues, but some ancestors and relatives definitely had Alpha One "markers."

WHAT NEXT?  Life with Alpha One changed a lot of what I had done before. I had lived between two dairies, two potato processing plants, had dealt with a lot of wind-blown volcanic dust in a high mountain plain desert, and in summers stayed indoors somedays because of agricultural spraying. I decided that wasn't the best environment to be in for my lungs. So a move to a lower elevation, away from agriculture areas and wind has helped so much, (except I have found that "air inversions" are not a good thing.) Mind you, I don't blame agriculture, dairies or processing plants for my ills, and most can live around them with no problems. I just needed to move because of me having "Alpha One."

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